Evidence demonstrates that customising services is effective - patient outcomes are improved and the provider gets better value for money. Angela Coulter and Don Redding argue for a personal health service
The future NHS - universal, free at the point of use and personal to me? That seems to be the new promise from politicians to patients. How can it work?
Gordon Brown used his first party conference speech as prime minister to declare that his great ambition is 'a National Health Service that is also a personal health service'. The Conservatives' policy group concluded that setting GPs free to drive health commissioning would result in better personal services. The Liberal Democrats are proposing personal care advisers at primary care level to help patients navigate the system.
But what does, or could, personalisation mean? Is it provider choice with knobs on, or is it, as health minister Lord Darzi's interim report intimated, getting patient choice and control 'embedded across the NHS'?
In November the World Health Organisation convened an international symposium in Tokyo on people-centred healthcare, where the Picker Institute proposed that the key to defining personalisation is to move away from consumer concepts towards patient empowerment. This is not about structural reform. It is a different approach to healthcare.
And it can be evidence based. Indeed, the evidence brings good news. Approached this way, personalisation works.
There is a body of systematic evidence as good as that for many clinical treatments which shows that services tailored to individual patient needs are more effective. Patients can get better experiences, health outcomes can improve, resources can be better.
Here are some examples of personalisation working. They are drawn from a review of the English-language evidence from around the world, found in over 150 systematic reviews and many more randomised controlled trials.
Patient-centred telecare, to support people living with chronic conditions, works. It reduces social isolation and improves people's confidence to manage. By improving their quality of life it reduces depression which can otherwise hold down their health status. And if it replaces home visits or clinic consultations it is clearly cost-effective.
Patient decision aids work. These aids are evidence-based tools that can be appropriate to any situation where the patient has to choose between treatment options with different risks. They are particularly designed to help the patient bring forward their own values, preferences and attitudes to the risks involved, and thereby to play a greater role in making the decision.
Patients using decision aids gain greater knowledge and a more accurate perception of risk. They are much more likely to get a treatment appropriate for them personally. There is good evidence that these patients use resources cost-effectively, for example, by taking up appropriate screening, or opting for non-surgical treatments where they prefer to manage their lives with an alternative option.
Personalised information for patients works and is clearly more effective than generic information. It is more highly valued by patients and creates better health outcomes. Combining written and verbal information works best of all, which is why it is important to build clinical involvement into the delivery of patient information and education. Information is most likely to be useful if end user groups are involved, not just in testing it, but in its early development.
Communications skills training for healthcare professionals works. It can lead to improvements in patients' knowledge, better patient engagement and better adherence to treatment choices.
Patient education for self-care works - but needs to be organised in the right way. Education programmes tailored to people with specific conditions such as diabetes, depression, eating disorders, asthma and hypertension have been very effective. But generic courses such as the expert patients programme have less proven benefit.
Longer programmes with a greater intensity have more effect and again, the involvement of health professionals in reviewing the patients' knowledge and working together on a personal action plan will add to the chance of significant benefits.
Involving patients in safety campaigns works. If patients are encouraged to ask staff openly if they have washed their hands there can be a measurable effect on infection rates. Patients with access to their medical records can spot and correct errors, thereby reducing risks. Better engagement of patients in understanding, monitoring and reporting the side-effects of medicines can improve safety regimes.
These are all examples of interventions that are patient-focused. They seek to involve patients as active participants in securing appropriate, effective, safe, and good value healthcare. A personalised healthcare system is one that can continuously produce and integrate such initiatives that recognise and respond to the patient's sense of self - their unique set of knowledge, skills, values and preferences - as well as to the signs and symptoms of disease.
So, if a nation is seeking a policy that personalises healthcare to make it more effective, what should their approach include? At the WHO symposium the Picker Institute proposed the following elements (among others).
First, building patients' health literacy - that is, the ability to understand and use health information - is an essential underpinning to patient engagement. The UK has information programmes but no national health literacy programmes.
Second, shared decision making between patients and professionals must become the norm. It should be a core part of definitions of quality and of the agreed standards for both professionals and providers. This should be supported by all available systems of incentives and rewards and in the policy framework for commissioning services.
Third, further and more systematic research into what works is required in most areas of patient-focused intervention. This would be a valuable role for national research and innovation programmes such as those the Darzi review is proposing.
National health services should ensure that patient engagement is built into all relevant systems and processes. For example, healthcare providers and regulators should have duties to protect and promote patients' interests, and involvement should be built into all oversight and scrutiny arrangements, quality control and other accountability mechanisms. Evidence of patient and public involvement should be a core requirement at every level of healthcare commissioning.
National regulators in turn can insist on patient and public involvement in service development and in performance monitoring. Explicit standards or targets can require evidence of patient and public involvement in setting priorities and in decision making. Providers can be asked to show how they support self-care and whether they meet best practice in providing health information and decision aids in a variety of formats.
But personalisation's success turns on the relationship between patient and professional. The education, professional standards, appraisal and incentive structures for professionals should all be aligned with patient-centred approaches.
Professionals will need to take individual or team-based responsibility for the personal delivery of information, sharing decisions about care and treatment, supporting self-care and signposting patients through the system - and should be duly scrutinised and rewarded for doing so.
These interlocking strategies for informing and empowering individuals, families and communities are important not just because they are somehow the right thing to do but because they may be the best way to enhance people's health and ensure the sustainability of health systems.
Vernon has prostate cancer and is confronted by a range of treatment options, from watchful waiting, through various medications to surgery. None is self-evidently 'right' - and each has its own risks, including possible harms to his sex life and his continence.
What Vernon may need is not just treatment, but help to make the treatment decision. His specialist nurse and consultant may have firm ideas, but what are his own preferences, values and fears? Are they based on accurate knowledge and the ability to trade one factor against another?
In 2005-06 four hospital urology departments piloted a urology decision aid in the form of a DVD about treatment options, accompanied by training for their specialist nurses and an assessment form to complete with patients to ensure they had been given and understood the information and registered their own values and preferences.
The Picker Institute's evaluation of the project found that the aid had slotted easily into care pathways and was welcomed by the nurses, as they focus their professional attention on decision support for patients.
Patients valued it and their knowledge increased, as did the concordance of treatment choice with their values and preferences.
The project's steering group is working to improve the initial materials and training and to roll out the decision aid to more regions and eventually across the NHS.
Such interventions, based on national and international evidence, but locally implemented and owned, complementing the knowledge and skills of healthcare professionals but eliciting the values and preferences of the individual patient, are the real basis for 'personalisation'.
At 70, Vernon prized his sex life and was prepared to put up with inconvenience, while fellow patient Fred wanted above all to remove his discomfort and opted for surgery. Care pathways need to change to allow them time for their decisions.